Wessex Bladder Cancer Support

Transparent logo

Sarah's Story

I am writing this about 2 and a half years following my Bladder Cancer diagnosis and 6 months following my cystectomy (Bladder Removal) operation. And I can honestly say life is good! I'm discovering that so many things I thought I'd never do again with a stoma and urostomy bag are all possible - I wear (almost) all the same items from my wardrobe; I am back to cycling and pilates - I can even lie on my stomach on the floor!


As a woman in my late forties I didn't realise I had symptoms of bladder cancer for some long time. Occasionally (say every month or so) I would notice what seemed like blood when going to the toilet but the next time my urine would appear completely clear. So I just assumed I'd imagined it; or that it was menstrual and then when my period didn't start I just assumed that's what happens at my age.


I finally went to the GP when I realised I was seeing definite blood in my urine on a very intermittent basis. He advised I would be seen at the hospital within 2 weeks because of the potential for cancer but clearly given my age and extremely healthy lifestyle (I've never smoked, rarely drank and enjoy keeping fit) neither of was worried.


Within a fortnight I attended Great Western Hospital (Swindon) for a cystoscopy (where they put a camera into the bladder). That's the good thing about the bladder - its easily accesible for a camera so the clinicians can see exactly what's going on. I still wasn't overly concerned and so the shock of seeing a tumour on the screen and being advised there and then that I had Bladder Cancer was the biggest shock of my life.


I felt perfectly well and yet I was being told I had cancer! It was a surreal time. I was immediately introduced to a wonderful Macmillan Nurse and recall thinking "What on earth are you doing here with me? Why aren't you with someone that's ill?"


The clinician explained that they would operate within 4 weeks to remove the tumour (TURBT) and depending on the pathology results I may need further treatment. As it turned out, the cancer was contained within the bladder but was high grade and so the operation was followed by a six week course of chemotherapy treatment - where the drug is placed directly into the bladder so no adverse side effects. This was followed by another cystoscopy under a general anaesthetic.


About 6 months later, I then began a 6 week course of BCG treatment (immunotherapy) as 2 further cystoscopies showed a recurrence of the cancer. Unfortunately, my cancer did not respond to the BCG treatment either and 18 months after my initial diagnosis the clinicians began to discuss cystectomy  before the cancer had the chance to spread outside the bladder.


I was referred to a wonderful consultant at Southmead Hospital in Bristol who did a further cystoscopy under a general anaesthetic on 23rd December (great timing!!) before reaching the conclusion that cystectomy was the best course of action to completely remove the cancer and ensure I'll live for many years to come. Ultimately that's really positive news when talking about cancer - but believe me, it's almost impossible to feel positive about having your bladder removed.


So, 21 months after my initial diagnosis and following 5 operations, 2 rounds of treatment, several scans and many hospital appointments, I attended Southmead hospital for a cystectomy. It's surreal going into hospital feeling perfectly fit and well yet knowing you are about to have life-changing (and ultimately, life-saving) surgery and that your body is never going to look the same.


As a woman, my cystectomy also involved an hysterectomy - although they left my ovaries in place as I'm not through the menopause yet.


Recovery is a lengthly process despite being aged 51 and physically very fit ahead of the operation. In  the early days, the focus is on physical recovery and then as the weeks and months pass the focus moves to emotional recovery. I doubt I'll ever like the look of my changed naked body but I do know that, 6 months after surgery, life is much better than I'd ever anticipated.


It's now such a relef to have the stress of the last 2 and a half years behind me and to be able to get on with the rest of my life (almost!) the same as everyone else.